sudden sensorineural hearing loss – My Hearing Loss Story

Airport Workers – Please Stop Shouting

A friend of mine recently told me a story about how her elderly grandmother, who is in her eighties, had travelled to Spain. It was only the grandmother’s second trip ever, travelling abroad.

My friend, her mother, and the grandmother were all travelling together and the grandmother was briefed about what to expect at the airport. Whilst packing, my friend and her mum had distributed their clothes and toiletries between the three combined items of hand-luggage. They explained to the grandmother that, although they had done the packing for her, should she be asked by a security worker whether she had packed her own bag, to confirm that she had. The purpose of this question, they assured her, was intended for crimes considerably more sinister than sharing luggage space.

They all arrived at the UK terminal and the grandmother was enjoying seeing the sights and the activity of the airport. When they reached the security gates, my friend’s mother was separated from the group when she was directed towards another conveyor belt. My friend stayed with her grandmother. They had another discussion about restricted items and the importance of declaring any liquids in hand luggage, and then both sorted their belongings into trays, which they placed onto the conveyor belt to be scanned.

The grandmother’s bag was selected for further inspection, due to a suspicious item which had been detected by the scanner. (Spoiler alert: it turns out she had packed some face cream in her bag, not thinking this would be classed as a liquid.)

The grandmother, who finds verbal communication difficult without her hearing aids (which she had innocently taken off to go through the scanner) was asked the question, as predicted. The security worker spoke in a loud voice, with over-accentuated arm gestures, and although the grandmother was able to understand what was being said, she became nervous. Instead of simply answering “yes”, to establish that she had packed her own bag, she blurted out, “Well …no! … I mean they were putting all sorts of things in my bag!”

My friend burst into laughter! The poor grandmother had felt so nervous at the sight of the security officer waving her arms around, that she hadn’t been able to tell this little white lie.

The story prompted me to think about how stressful airports can be. I have lived and travelled in Europe and Southeast Asia, and have experienced many airports. Yet, I find airports in the UK to be some of the most stressful.

The main reason I find UK airports particularly stressful is because the customary code of behaviour for a large number of airport staff, seems to be shouting at travellers, often whilst herding them like livestock through the various elements of the airport procedures. The shouting of orders from airport workers increases my stress levels. This stress often makes me feel irrationally guilty and I sometimes even doubt my own credibility. Maybe I am carrying a sharp object. Maybe a bottle of water has somehow made its way into my hand luggage. Even with full hearing, this used to make me feel stressed. Now, with hearing loss and a sensitivity to sounds, the shouting seems louder, more uncomfortable.

Due to the lack of sound-absorptive soft furnishings in airports, I am frequently unable to understand what people are saying, as loud voices overlap each other, and the sound becomes distorted. I am a native English speaker and I feel stressed in this situation. Surely for other travellers, such as those whose first language isn’t English, this is also a cause of stress? Imagine being in an airport situation where staff members are shouting things you don’t understand.

During a recent airport experience, I was waiting in the queue at the security gate. I had already removed my boots and was holding my scarf and coat in my hands, ready to place in a tray to be scanned. As I approached the security conveyor belt, the shouting began:

FADE IN:

INT. UK AIRPORT, SECURITY GATE – EARLY AFTERNOON

SECURITY WORKER shouts something at ME, which I am unable to decipher.

I look at SECURITY WORKER with confusion, but am now focusing my attention on her – ready to listen to whatever she yells next.

SECURITY WORKER
(Impatient tone)
Do you have any liquids?

Me
No.

I put my head down as I begin to arrange my belongings into different trays.

SECURITY WORKER shouts something at ME, which I am unable to decipher.

I look at SECURITY WORKER again with confusion.

ME
I’m sorry, I’m hard of hearing.

SECURITY WORKER
(Shouting, with accentuated lip movements)
Are you carrying any makeup?!

ME
(Using a quiet voice, in an attempt to gently coax her volume level down a few notches)
No.

I put my head down and continue to arrange my belongings into different trays.

SECURITY WORKER shouts something again at ME, which I am again unable to decipher.

I Look at SECURITY WORKER again.

SECURITY WORKER
(Shouting)
Are you carrying any hand sanitizer?! Toothpaste?!

My belongings are neatly arranged into three separate trays. I look down as though I am giving this question some consideration.

ME
No.

I put my head down so as to not have to engage in any more questioning.

SECURITY WORKER
(Shouting)
Do you have any lighter fluid in your coat pocket?!

I look at SECURITY WORKER again. OK, I heard her this time, but I have had enough, and feign mishearing.

At this moment a more perceptive security worker behind me taps me on the shoulder and directs me towards the body scanner, bypassing further interrogation.

I walk through the body scanner and the inquisition continues behind me.

ANOTHER SECURITY WORKER
(Distant shouting)
Are you carrying a hairdryer, toaster, microwave?!

FADE OUT.

At the airport, I feel lucky to have some degree of hearing ability. Though not a simple task, I can generally navigate the system calmly and without needing to mention my hearing loss.

The one time that I did request special assistance, was when travelling with my boyfriend. This was more for research purposes than necessity. I was intrigued to see what type of support would be provided, and thought that perhaps this could be a good option for me when travelling alone. When booking my flight, I informed the airline of my hearing loss. Upon our arrival in Spain, we were met at the door of the plane by an airport assistant, with a wheelchair. He checked my name on a list on his tablet, and after witnessing me walk out of the plane unaided, asked me whether I needed wheelchair assistance. I was tempted to sit in the chair and get him to wheel me as fast as he could out of there. Instead, I signed my name in an electronic document, and his job was done.

I am aware that some airports now have a lanyard system to alert airport staff that the wearer has a hidden disability. It is not necessary for the wearer to formally declare their disability, and the airport staff can easily identify travellers that may require some extra help or attention. I haven’t yet used one of these lanyards, but think it is a great idea. And, for making airports more widely accessible, it’s definitely a step in the right direction.

But, my request to all airport staff, especially those who work in the security belt area, is simple: Please Stop Shouting. It can cause a lot of stress, especially for people with hearing loss, and isn’t helpful in aiding our understanding. Try speaking clearly and calmly instead. I understand you have an important job to do, and that you are probably tired, patience-drained, and may have been treated with disrespect by some members of the public. But, surely everyone, on first encounter, (whether they are wearing a lanyard or not) deserves to be treated gently and with respect.

This article was recently featured on The Limping Chicken – the world’s most popular deaf blog!

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Eva’s Hearing Loss Story

‘… a few months back, I decided that I was going to do whatever I wanted to do, without hesitation…What happened? I wasn’t perfect, but I was pretty damn good!’

Following my hearing loss in 2016, I started writing a blog as a way of documenting my thoughts, feelings and observations. It is through my blog that I have connected with many people who have experienced different forms of hearing loss, all with their unique stories.

Hearing loss can present many challenges, both practical and emotional, to the lives of those affected. When we exchange hearing loss stories, we have the opportunity to increase our understanding of the difficulties that living without full sound can bring, and we can use this knowledge, and the advice of others, to develop our coping mechanisms. I have realised the comfort in sharing experiences. Sharing my story has helped me to feel part of a supportive community and I feel less alone in my hearing loss journey.

Let’s Meet Eva

I first ‘met’ Eva in April 2019, when she contacted me through my blog, two months after experiencing a profound sudden hearing loss in her left ear, very similar to mine. She also has tinnitus and some slight balance issues, which accompany her hearing loss.

Eva is 45 and is from Southern California. She enjoys hiking in the mountains and the beautiful Californian terrain, playing golf, yoga, attending her local book club meetings, and spending time with her friends and family. She was working as a director in the business office at a local college but recently stepped down from this demanding position as a result of her sudden hearing loss. She is now in a less demanding role at the college and continues to work full-time.

She has a positive approach to dealing with her single-sided deafness and is working to recover her life since her loss. Eva and I have talked a lot about hearing loss grief, something which we both identify strongly with. She recently remarked, “I hope someday soon my usual cheery self will be my default setting again and not something I have to work so hard to achieve each day. I’m getting there and have made tons of progress.” She recently acquired a CROS hearing aid and she is currently trialling it to see if it will provide her with adequate support. She says, “The jury is still out”.

Eva and I have formed an online friendship, based on regular communication through Email. She kindly allowed me to interview her, during which she gave a very honest account of her hearing loss story…

Eva, has your life changed since your hearing loss?

The first six months following my hearing loss were significantly difficult, but things are starting to settle now that it has been 9 months.

At first, I could not sleep. I do not know if it was tinnitus or anxiety, or my body freaking out due to not receiving input from one ear. I would wake up in a severe panic any time I’d fall asleep for even just a few minutes. I am sleeping much better now, my body has adjusted. It is still not as good as it was before the hearing loss (I was a great sleeper, could sleep 8 or more hours straight if you’d let me), but I am getting at least 4 hours per night each night.

I also had a lot of sensitivity to loud noise, so it was difficult to be in many situations, such as restaurants, church, family parties, etc. I kept pushing myself to be in noisy situations and I find that I am more used to it now, it doesn’t bother me very much anymore. Loud noises would sound so terrible as they entered my damaged ear and would cause awful noises, it still does but I am more used to it now.

Of course, my limited hearing makes certain situations difficult. I have to lip read a lot more, I’m getting better at it. I am very aware of where I am in a room to ensure I will be able to hear. Sometimes people call out to me or approach me from my deaf side, and I have no idea they are there. I am often surprised to see someone standing next to me, sometimes they are talking to me and I have no idea.

Finally, I feel this has greatly affected my relationships with those closest to me as it is difficult for them to understand why I am down. I try really hard not to be down, but it is difficult and I think they may become tired of my negative energy. I know I will come out of this, but it is taking time and I cannot force it. I need time to grieve.

What have you found the most challenging about living with hearing loss?

Strangely, the hearing loss itself is not the most challenging. It is challenging, but my one good ear provides sufficient hearing to function in most situations. The more challenging part is the psychological and emotional part. The grief, the depression, the anxiety, the inability to sleep, the toll it has taken on my relationships, the blow to my self-confidence.

What advice would you give to someone who has recently experienced a sudden hearing loss?

I believe meditation, taking walks, and positive journaling has helped me tremendously to cope with the psychological turmoil that comes with sudden hearing loss. I think any person, healthy or not, should start practicing meditation, so that when something terrible strikes (and it will!), you have built experience meditating. Same goes for taking walks and positive journaling. It is very difficult to get used to your entire world sounding different, the tinnitus, etc. and you can never escape it, so keeping your mind calm and focusing on other things (by meditating, journaling, taking walks) will help get you through.

Eva also gives encouragement to others and shares her advice in my Facebook support group. In a recent post, she shared her positivity with the other group members in an inspirational comment:

‘… a few months back, I decided that I was going to do whatever I wanted to do, without hesitation. I was going to end the negative self-talk and the fear and just get out there and do my best. I got on an airplane, I swam underwater, I went dancing at posh night clubs, I went to a concert, I went hiking on jagged trails, all things I was either terrified to try (irrational fear that my ear would hurt or blow up or something crazy) or things that I thought would be overly difficult where I’d look like a fool. What happened? I wasn’t perfect, but I was pretty damn good and I felt proud and more encouraged each time. I haven’t stopped since and I find that the more I subject myself to it, the better I get at being in crazy, noisy, rocky places where I thought I’d never be able to function again.’

I really admire Eva’s optimism and motivation in moving forward with her life following her hearing loss. Thank you, Eva, for sharing your story.

The Loneliness of a Busy Restaurant

What I have realised is that I appreciate the hearing I have left. And, I pay extra attention to my other senses, as I now rely more on these to interact with the world.

Sitting at the bar in a busy Mexican restaurant in Madrid, I realised just how lonely I was feeling.

Madrid is a great place to live and is a city full of people who enjoy eating out in the evenings. It can be difficult to get a table in a restaurant without making a booking, even on a weekday. This is how we came to be sitting at the bar. I had positioned myself so that my two friends were situated to the right of me – my ‘hearing’ side – so I had the best possibility of hearing them in this situation.

I don’t often go out during the evenings anymore, as I find restaurant noise difficult to be around, sometimes even painful. For three years I have been living with single-sided deafness and I am conscious of my hearing limitations. I knew that I was going to find it difficult to follow conversation amongst the background noise of music and people chatting. Still, I was feeling excited to be spending an evening in a nice restaurant with such a lively atmosphere and surrounded by the delicious rich aroma of Mexican food, which had enveloped us as we’d entered. We had ordered food to share, and it was going to be brought out to us slowly, one dish at a time. I was eager to start eating.

Both the restaurant and bar area were part of the same small space. As the customers consumed more food and drinks, the energy in the restaurant increased and people began to talk with exuberance; the noise levels steadily started to rise. I soon realised the extent of the communication difficulties I was going to have during this evening when, after speaking with me for a while, my friend next to me turned her body to face the other member of our group, during the course of conversation. I had been grasping at fragments of her words and sentences with determination, trying to make sense of them. I had been studying the shapes her lips were making to help give me some indication of what was being said. Now, looking at the side of her face and with no audible vocal clues, I was alone, and no longer part of the discussion.

I didn’t feel annoyed or even upset; I just felt resigned acceptance. Both members of the group were aware of my hearing difficulties. Of course, my friend was always going to need to turn her head away from me at some point. In fact, the conversation had started with her facing me. She was making sure both her companions were being addressed. But, this usually inclusive method of conversation had been complicated by my hearing loss, meaning that it was only possible for me to be involved in broken elements of the dialogue. If I had been with just one person, communication would have been much easier as I would have had the full advantage of always seeing my conversation partner’s face. Or, if we had been able to sit at a table, I could have sat opposite the third member of our group, enabling me to watch his reactions. I would have been able to study his facial expressions and follow the movement of his lips, and maybe, might even have caught some of the letter sounds and words he was saying.

In accepting my situation and realising my inability to successfully follow the conversation, my experience in the restaurant became one based on sights, smells and tastes. I concentrated on these senses which helped to divert my attention from the noise of raised voices. I noticed the decoration of the restaurant. I focussed on the black circular dish behind the bar, full of rock salt, with a peak in the middle, specially designed for coating salt to the rim of a margarita glass. I became lost in my observations. I watched as the bartender meticulously prepared drinks with concentration and care, rubbing lime around the rim of the glass and dipping it elegantly into the salt, so as to form an even rim of crystals. I observed the way he mixed cocktails, vigorously shaking a cocktail shaker, and then bending down to examine each drink carefully before sending them to customers. I noticed the small group of people working in the kitchen at the end of the bar, milling around continuously, some wearing white chef hats. I turned around to look at the groups of people sitting at the tables; I observed them talk animatedly to each other. The atmosphere in this small space was intimate, yet lively. Peoples’ faces looked happy and relaxed. I focused on the taste of the food. I really tasted it, trying to figure out the main ingredients.

When you lose a sense or part of one, there is a theory that your other senses are heightened. I’m not sure if this is the case. What I have realised is that I appreciate the hearing I have left. And, I pay extra attention to my other senses, as I now rely more on these to interact with the world.

I was happy to be out having a meal in a fantastic restaurant. Following my hearing loss, it had originally taken time for me to get to a stage of dealing with noise sensitivity issues to even be able to enter a busy place like this. Yet, this experience, for me, wasn’t one centred around social interaction and conversation, as it seemed to be for the other diners. It was an evening of observation, of noticing delicious aromas of freshly prepared cuisine, and of moments really appreciating the taste of the dishes. I enjoyed the atmosphere and the food, yet without the ability to converse effectively, I felt like I had experienced a lot of it alone.

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Learning a New Language with Hearing Loss

I have been living in Madrid for nearly 5 years. During the first two years, I was actively learning Spanish. I was attending evening classes, listening to daily language-learning podcasts on my commute, and was making an effort to converse with Spanish members of staff at work.

My sudden hearing loss happened at the start of my third year in Spain, and since then there has been a marked change in my ability and confidence in learning a second language. Now, over two and a half years following my hearing loss, I still feel like I haven’t addressed this deflated self-confidence.

After I lost the hearing in my left ear, I didn’t return to the evening classes. The sessions were heavily structured around mixing learners together to work in pairs or small groups, requiring them to contribute to the discussion. During each class there would be long periods of time involving many people talking in their groups, which meant overlapping voices, bouncing around the small sparsely furnished classrooms, making hearing and focusing any particular person’s voice very difficult. There were students from many different countries, which would add another obstacle to language learning in a class; with only hearing in one ear comes a difficulty understanding the different intonations and complexities of accents.

As I gradually started to discover mechanisms to manage life with single-sided deafness, I also began to realize that the matter of learning Spanish had been unintentionally suspended during the prior months. And, since returning some focus to my Spanish communication skills, I have realised that learning a language following a hearing loss can present some challenges.

My preferred way of learning Spanish was always through hearing it: by listening to podcasts and eavesdropping on conversations. I continue to be able to recognise Spanish words which I am already familiar with, particularly ones used habitually in conversation. New words, however, pass by quickly in speech, before I have time to think about the way they may be spelt or correctly pronounced. It is now more of a challenge to hear all the phonemes in a word which makes it difficult to identify new words and phrases accurately. Previously I could hear a new word once or twice and be able to spell it. Now, it takes many listens, and sometimes I just can’t hear it clearly.

When learning a new language, it generally takes time to process what has been said in conversation or an instruction, before reacting. Often it has been moments after speaking to someone when I realise what has been said, and by that point, the conversation has perhaps moved on. Similarly, with my hearing loss, it can take a moment to consider spoken information, which I may have only partly grasped, before attempting to decode what has been said. And so, a language learner who also has hearing loss may need extra time for reflection in conversation to enable comprehension.

A pause in dialogue may suggest to a native speaker that they have not been understood when their conversation partner is a language learner. If I ask a Spanish speaker to repeat themselves or if I say ‘pardon’ to signal I haven’t heard what they have said, they often reiterate their words in English, after hearing my accent. They assume it is a matter of misunderstanding due to language ability, rather than a hearing concern. This can be frustrating. I appreciate someone making an effort to speak to me in English with the intention of being helpful, but conversely, it isn’t aiding my language learning or confidence. I know my understanding of spoken Spanish is good, but with the abundance of background noise in public places, there are rarely the ideal listening conditions to facilitate this.

With my hearing loss came a difficulty in gauging the volume of my voice when there are other noises present. If I speak in Spanish and I don’t receive a response, I quickly lose confidence in my words. I usually assume I have pronounced or phrased something incorrectly. But, maybe at times, the issue isn’t my Spanish, rather that I simply speaking too quietly and am not being heard.

Quite surprisingly, I feel that I have developed some skills that ‘hearing people’ may not be as adept at employing in communication as those without full hearing ability; skills that actually help me to comprehend a second language. My hearing loss has prompted me to develop my skills in interpreting tones and in extracting meaning from fragments of dialogue. I am accustomed to filling in gaps left by undetected or misheard words in speech. When someone I know well, such as my boyfriend or my sister, makes a quick comment without first getting my attention, I may hear a collection of tones rather than words. Using my familiarity with their common speech patterns and knowledge of context I can often make a correct assumption regarding what they have said, sometimes without actually hearing a single word. When applied to communication in Spanish, I am able to use this skill to make conjectures, and while this method isn’t conducive to gaining a thorough understanding of a conversation, I am generally able to grasp the essence of a discussion.

I never really appreciated how much I depended on my hearing when learning Spanish. Although it can be challenging and may demand a lot of patience, hearing loss isn’t a barrier to learning a new language. There are many ways to learn a language and there are many resources available, such as phone apps and podcasts with transcripts. I now realise that in order to continue progression in speaking and listening tasks with my hearing loss, I will benefit from focussing more on the written aspects of Spanish. Visual familiarity with new words and sentence structures will help me identify these in dialogue. Perhaps, most importantly, I need to concentrate on building my confidence in continuing to learn a language without full sound.

If you have experience of learning a new language with hearing loss, I’d love you to share your stories and any tips you have. Please feel free to leave a comment.

This article was recently featured on The Limping Chicken – the world’s most popular deaf blog!

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Hey Rosey – My Music Festival Story

I was dancing! I was smiling! Some of my hearing loss grief was lifting, and this stifled part of my personality; this love of live music, was being reignited.

The room was small with black dividers forming the walls. It was simply furnished with a black coffee table and, in contrast to the dark surroundings, two white sofas which lined adjacent walls and were pushed together in the far right corner of the room. The air was stuffy and I moved my hair back from my forehead with my hand. Sitting on one of the sofas, I took a sip of my gin and tonic in an attempt to remain composed and to try and coax my fantastically overwhelmed grin to feign a cool smile. A sense of relaxed intimacy filled the air as more people entered the room, and music began to sound in gentle tones. Despite the warm atmosphere, a confused mixture of feelings had taken hold of me: astonishment, excitement, and absolute joy. I was a stranger to this level of attention, this kindness.

At the beginning of this year, I was involved in making a radio documentary for the BBC World Service, which detailed some of my experiences following my sudden hearing loss. During a moment in the recording, I found myself in an emotional situation. I was in an empty music venue and was explaining that I would no longer be able to go to live music events, due to my sensitivity to loud noises; a consequence of my hearing loss. I realised I would never be able to see my favourite band, The National, play live.

Many aspects of life have changed for me since the day I lost full sound. I have found that it is often the small, more personal effects of losing my hearing that carry the most impact. Tiny chunks of my personality have been broken away by some of the cruel repercussions of my hearing loss. When dealing with tinnitus, dizziness, ear pressure and sensitivity to sound, I sometimes feel that my focus is driven away from the things I love; the intrinsic pieces of my personality that make me, me. I have always enjoyed music, in particular going to summer music festivals. This love of music had been repressed; forced into quietness by the accompanying conditions to my hearing loss.

A few months after the documentary recording went live, I was contacted by the National’s manager and was invited to go backstage to meet the band before a show they were playing at MadCool; a music festival in Madrid, where I live. Of course, I was very excited at the prospect of meeting the band. Yet, it was also difficult to imagine this as an experience I would be able to enjoy, or perhaps even tolerate. After all, I had spent almost three years avoiding loud noises and live music events. But, it was a wonderful opportunity and one which I couldn’t refuse. I explained my sound sensitivity issues with the tour manager and was told that, if I felt comfortable, after the Meet and Greet I could watch the concert from the side of the stage where it would be much quieter than the audience area.

The weeks leading up to the event, I was nervous and excited. I was nervous about the festival noise and volume levels. I was nervous about meeting the band. I was determined to enjoy this day as much as possible. I was in a privileged situation and was going to make the most of it, though I knew the day would bring challenges.

As well as having noise sensitivity issues, I have also been advised by specialists against attending live concerts. I needed to ensure that I wasn’t going to be in any position that could cause noise-related hearing damage. And, above all, I needed to feel comfortable. I was going in prepared. I packed a bag with my earplugs and some ear muffs. I was ready.

My boyfriend and I arrived at the festival on a very hot day. The vibrations of the sounds as we approached the outdoor venue caused some pain in my ears; I had forgotten the strength of live music. Luckily, we didn’t have to spend much time in the main grounds of the festival.

After enjoying some time in the artists’ area, the band’s tour manager came to collect us. We followed her as she moved briskly, and within seconds we were walking down a black corridor with labelled doors on either side. I glanced up and read one of the labels: ‘The Smashing Pumpkins’. Oh my goodness! – We were in the artists dressing room area!

We reached the end of the corridor and I stopped for a moment at the realisation that I was about to meet my favourite band. “This is really happening, isn’t it?” I said to my boyfriend. Until this moment, I hadn’t quite believed it.

We turned left and walked straight into The National’s dressing room. It felt like entering a scene from a film. The first person I saw was one of the guitarists, Aaron, standing in the doorway playing his guitar. He greeted me and introduced himself. We were quickly introduced to the other band members and I had a brief chat with Matt, the lead singer. My boyfriend was busy talking to some of the other band members when Matt asked me to sit down on one of the white sofas. He told me to choose a good spot. I didn’t know what he meant by this, so I placed myself to the left of where he sat down (my hearing side) so that whatever happened, I would have some chance of hearing him.

Matt was joined by Gail, one of the female vocalists on their new album, and they were handed a sheet of song lyrics. I read the title: Hey Rosey.

And then, without any announcement, they began to sing. Music played in beautiful acoustic notes and the gentle tones meant that I was able to listen and enjoy it without pain. I thought perhaps the band were rehearsing before going on stage. But, very soon I realised they were playing solely for us. There wasn’t going to be a group of special guests as I’d expected – we were the only ones! This song was ours. I took a sip of my gin and tonic.

When Matt, the lead singer, began to sing I was reminded of a time a few years ago when my boyfriend bought me some new headphones. They were much better quality than I was used to, and to test the sound quality I played a song by The National. The music sounded so clear, almost like I was sitting in the room with them. At the time I commented that it was like a private serenade through my headphones. But, at this moment, I realised it was nothing close.

I tried to take it all in; looking at the faces of the band members, listening to the music, and enjoying the atmosphere. I wanted to be able to remember these moments; sharing this intimate display of creativity.

After the music stopped, I continued talking to Matt. He asked a little about my condition and he commented on how generous he thought I had been in sharing my story through the documentary.

Continuing the theme of the documentary that had brought me to this moment, I asked Matt whether there was a sound that he treasured. He paused for a second. Then suddenly he was visibly struck with emotion. He threw himself back in his chair and held his head in his hands, and replied, “The sound of my daughter giggling…her giggling.”

Soon, we were ushered into a black van and were taken to the backstage area. The stage manager showed us the setlist of songs and explained where we could stand on the stage. I was hoping I would be able to enjoy this, without the worry of hearing damage or sound sensitivity issues.

We watched as the band entered the stage, a few metres from where we were standing. Then the concert began.

I was wearing my earplugs and was able to tolerate the volume level of the music. From the side of the stage where we were standing, the vocals were sometimes difficult to hear, yet the feeling of music dancing through my body filled me with excitement. This energy, I hadn’t experienced for almost three years.

Matt dedicated the song Hey Rosey to me. Unfortunately, I didn’t hear him say my name, but my boyfriend alerted me, and I saw Matt waving. I waved back with unreserved delight. I was dancing! I was smiling! Some of my hearing loss grief was lifting, and this stifled part of my personality; this love of live music, was being reignited. I was filled with exhilaration. I thought I would never be able to go to a live concert again, and here I was, watching my favourite band from the side of the stage like a rockstar!

I have come so far on my hearing loss journey. In the documentary, I spoke about how I was trying to be aware of the sounds that I love, and to not take them for granted. This love of music will always be a part of me, and I hope to be able to continue to appreciate music throughout my life, whatever my hearing capacity. And, if this was to be the last concert I’ll ever attend, rest assured I enjoyed every moment.

Thank you to The National, Shaun Gibson from Straight and Narrow Artist Management, AJ Faber, and everyone else who made our backstage experience so special. Thank you also to Chelsea Dickenson from Audio Always who, without her documentary, this would never have happened. It was a truly amazing experience and one which I will treasure. You have all made my smile brighter.

Click here or below for the dressing room acoustic session.

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Living with Single-Sided Deafness

I lost the hearing in my left ear through sudden hearing loss in August 2016. There wasn’t a known cause for my hearing loss, I wasn’t feeling ill and I didn’t have an infection. One day the world to the left of me just fell into silence. The hearing loss was profound which means I have no functional hearing in my left ear, and for just over two and a half years I have been living my life with single-sided deafness (SSD).

People with SSD are able to hear through their ‘good’ ear, yet have a profound hearing loss in their other. I am thankful that I am able to hear with my right ear, yet living with SSD comes with its challenges.

Sound localisation is a skill enabled by having two working ears, and so with only one hearing ear, I have no idea where sound is coming from. I might hear some music or a noise, but I don’t know which way to look to see what has produced the sound. Trying to find a mobile phone that is ringing results in me wandering hopelessly around my apartment with my ‘good’ ear leading the way and looking to see if I can spot it, usually ending up back where I started and realising the phone had been next to me all along. Locating a music source is also a challenge. There was one occasion where I was walking in the centre of Madrid, where I live, and I could hear a busker playing the guitar and singing a Bob Marley song. Whilst gazing around to see if I could find the owner of the interesting staccato-type singing I stopped in my tracks with a jump as I almost fell over the person responsible; who was positioned in my path, undetected by my gazing view and lack of directional hearing.

Thinking that all sounds are coming from my right has resulted in some scary instances when crossing roads when I haven’t realised traffic is approaching from my deaf side. It has also resulted in some, in hindsight, comical moments. One day, I was sitting on a seat at the end of a row of seats, on the metro train. I thought that I could hear someone playing the accordion somewhere far down to the right of the train. I was feeling relaxed, and as I tried to focus on the tune that was being played, I saw the woman opposite looking at something next to me. I turned to my left, to where she was looking, only for me to jump up in my seat as I let out a little yelp; startled to see the accordion player was actually standing right next to me, on my deaf side.

My boyfriend automatically walks on my right-hand ‘good’ side where he knows I will hear him. This prevents me from having to continuously turn to face him with my ‘good’ ear, in attempts to catch some snippets of conversation. With friends, who often forget which is my hearing side, or for those who don’t consider it, I place myself on their left. When they inadvertently change sides whilst crossing a road or when they stop to look at something in a shop window, I find myself dancing around them; trying to position myself as quickly as possible back on their left side.

When I’m on my own in everyday places and situations I sometimes feel vulnerable. I worry about crossing the road, and not knowing which direction to move out of the way when I hear the siren of an emergency vehicle. I worry about strangers talking to me, and not being able to hear them, or even worse failing to acknowledge them; if they have addressed me on my deaf side. I unwittingly ignore people to the left of me and often notice a frown on a stranger’s face, presumably because I have failed to respond to them or to move out of their way. I find myself constantly scanning my surroundings; checking people’s faces to see if they show any sign or clue that they are speaking to me.

With single-sided deafness, I find it difficult to hear when there are other noises present. Our brains are responsible for selective listening, which is more challenging without the help of a second ear. In a noisy environment, it is difficult to focus on a single person’s voice. Socialising can be demanding amongst background noise. In restaurants and bars I have learnt to sit in a corner, or with my deaf ear against a wall and my hearing ear facing the person I am speaking to, in order to have some chance at hearing them in conversation. I have learnt that it is only possible to concentrate on listening to one person at a time.

With my single-sided deafness has come tiredness, frustration, loneliness within groups of friends in conversation, and super-sensitivity and hyper-reactivity; meaning I am startled easily by unpredictable or sudden noises. I also have difficulty multitasking and find it hard to perform another task while listening.

Yet, I have found that being able to see some humour and positives, however small, in some of the situations I find myself in, can help me stay positive. For instance, with single-sided deafness, I can block out sound during the night or when having a nap, just by putting my ‘good’ ear to the pillow. I only need to use one earphone when listening to music, and if there is someone I don’t want to listen to, I can make sure they are sitting on my deaf side.

If you or someone you know is also living with SSD, I’d love to hear from you. Please feel free to leave a comment and share some of your experiences.

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This article was recently featured on The Limping Chicken – the world’s most popular deaf blog!

Hearing Me – A Documentary for the BBC World Service – Now Available to Listen to!

It’s been two and a half years since I suddenly lost the hearing in my left ear, and today I am celebrating all I’ve achieved since my hearing loss. Thanks to the BBC World Service, I am very happy to share this glimpse into my life without full sound.

Hearing Me is now live to listen to! Please note, a transcript is also available through the same link – just scroll down the page to download:

https://www.bbc.co.uk/programmes/w3csynqv

Another big thank you to Chelsea Dickenson (Audio Always) who spent 4 days following me around Madrid with a microphone, and who showed me just how much energy and attention goes into making a radio documentary.

Please take a few minutes to listen and share. Thank you 🙂